Campus News

Grisanti urges lawmakers to fund MS registry

By SUE WUETCHER

State Sen. Mark Grisanti, along with multiple sclerosis patients
and UB researchers, advocated last week for funding from New York
State to maintain and expand the New York State MS Registry and
Consortium.

The consortium and registry are led by Bianca Weinstock-Guttman,
professor in the Department of Neurology, UB School of Medicine and
Biomedical Sciences. MS specialists from around the state are
members of this consortium of MS Centers and enroll patients in the
registry. In exchange, they may use the registry data for their
research.

“This is very personal to me; my brother, Richard, has MS
and I know firsthand the struggles that MS patients go
through,” Grisanti said in a statement. “We must be
able to detect the causes of MS at the earliest stage. In Western
New York, we have one of the highest populations of people who
suffer from MS in the nation. That is a cause for immediate action
and continuing to support and fund the New York State Multiple
Sclerosis Registry.”

Grisanti is a member of the New York State Multiple Sclerosis
Legislative Alliance.

Fifty supporters of the statewide MS Registry gathered to
advocate for state funding at a press conference on March 15 in
UB’s Clinical and Translational Research Center on the
Buffalo Niagara Medical Campus.

Founded in 1994, the New York State Multiple Sclerosis
Consortium is a group of 15 MS centers across the state organized
to assess the demographic and clinical characteristics of MS
patients seen in their centers. This MS registry is one of the
largest MS databases in the world; it is unique in that it includes
information gathered from both the clinician and the patient, which
makes it valuable to researchers. The registry includes the records
of nearly 10,000 MS patients, representing approximately one-third
of the 30,000 New Yorkers who have this progressive disease for
which there is no known cause or cure.

“MS costs New York State up to $2.5 billion a year
in health care costs, lost wages and tax revenue,” said
Weinstock-Guttman. “And all that is being asked for is $1
million to continue the registry. The registry provides researchers
like me and my colleagues at UB and across the state with an
invaluable tool to learn who will best benefit from certain drugs
and treatments, what is causing MS and, someday, how to prevent
it.”

UB researchers have been working for years to get a better
understanding of MS in order to develop better ways to diagnose and
treat it. They say the registry provides a critical, real-world
view of the disease and insight into how patients deal with the
symptoms of the disease on a daily basis.

Among the issues researchers wish to examine is whether the high
rates of MS in New York State are due to environmental causes.
“The data supplied by the registry will allow us to study
patterns and variations caused by exposure to air, water nd other
environmental factors throughout the state to see how those factors
may affect the risk of developing MS and how patients experience
it,” said MS researcher Murali Ramanathan, professor of
pharmaceutical sciences, UB School of Pharmacy and Pharmaceutical
Sciences.